I hate this disease for many, many reasons - the first one being that I've got it. The second one being that the so called experts after sixty years of research (and $500m in research funding from the US MS Society alone) still haven't got a clue what is happening, thirdly, that so many companies are making so much money from relatively ineffectve treatments (Biogen's revenue last year from Avonex was over $1.2 billion). I could go on.
But what's really bugging me at the moment is the effort we are making, as sufferers of this disease to identify the best treatment plan. Dignan has done some fantastic work to list all the treatments which are approved or in trial:
http://www.thisisms.com/modules.php?nam ... pic&t=1363
But the choice is mind-boggling (and will increase in the next few years). All I want is treatment to halt this disease in its tracks and allow some repair to take place. But none of the current treatments appear to offer this despite being incredibly expensive.
How is one able to make a judgement? The four ABCRs have limited effectiveness (30% reduction on average on relapse rates), are injected, have nasty side effects (potential liver problems, injection site reactions, flu symptoms etc). The chemo based therapies may offer better effectiveness but the risks appear higher e.g. heart problems and can only be used for a limited time.
Anti-biotics are an option IF the disease has a bacterial cause - and the jury is still out. Some have reported good results others haven't seen any. The same for LDN - some say it works wonders, others say made no difference. Minocycline shows some promise but again no definite answers from the research world.
Some of the monoclonal antibodies look promising e.g Campath which has shown a dramatic reduction in relapses and some clinical improvements. But a death on the trial and no effect on SPMS dampens the initial enthusiasm. Daclizumab (see home page) appears to be good in early small trials at reducing lesions / lesion loads and improving clinical status. But it is being used with the ABCRs - so there is the potential of another Tysabri fiasco. Biogen have recently bought into Daclizumab so a combo is bound to be the option pursued.
Many of the monoclonal antibodies are targetting part of the immune system / inflammation (which may or may not be the primary cause of MS). IL-2, IL-12, T cells, B cells - the list is endless, but which is best?
So over the next 5 years we could have many more treatments on the market - but how much better off will we be? How do we make a choice? Do our neuros have open minds, or will they stick with what they know - the ABCRs.
Apologies for raising questions which I do not have answers to, but I feel that there a range of theories about this disease and a range of current treatments responding to these theories (or in part), but we are in the middle without any real guidance except the help of fellow sufferers (one of the real plus points of this site).
DO others feel the same frustrations me? Does anyone have any approach to making these decision which they could share? Is it right that we should try something for a time and then switch to something else etc etc if things aren't working well?
Any advice much appreciated.